The Equipment

Babies are a lot of work.  It's difficult to just get up and walk out of the door without planning because babies need diapers, food, extra clothes, toys, etc.  There is a lot of planning and packing for trips.  Babies with special needs are even more work.  Packing takes forever because you have to check and double check that you didnt forget anything.  After all, you can't just run to a local Wal Mart and pick up some vent circuits, trach ties, or pulse ox probes.  Even after all of the packing, when you get to your destination you have to unpack everything and figure out how to set up all of the equipment in a strange place.  It's a lot of hard work just to go on vacation but the fact is that us SN parents really need a break from the daily grind and it is worth a little extra effort to get away for awhile.

When Noah first came home from the hospital he had a vent, apnea machine, pulse ox, CO2 monitor, suction machine, feeding pump, plus all of the supplies that go to this equipment (leads, circuits, filters, etc.), plus all of the supplies for trach care (extra trachs, trach ties, suction catheters, etc).  I remember the first day home was so wonderful and scary.  Beth had her first band recital that night and Hannah ended up having a tummy bug.  We were so ready to get Noah home that we didn't care about any of that.  We rushed from the hospital and the DME (the equipment company) came to our home shortly thereafter.  We set everything up and they brought our supplies.  We were still so new at getting Noah out that we decided to leave him at home with his grandmother (Hannah stayed also since she was still sick) and we went to the concert.  Once we got home and everyone left, we tried to settle in to our new "normal".   We hooked Noah up to his vent, pulse ox, CO2 machine, feeding pump and apnea machine.  He had so many wires on him that he looked like a science experiment.  We were so tired emotionally and physically that we went to bed early.  Needless to say, we didn't sleep.  We immediately decided to turn off the apnea monitor.  It seemed useless anyway because we knew he didn't breathe much while sleeping so the thing was constantly alarming.   After a few nights of more beeping, we decided to unhook the CO2 machine and just do spot checks because water was getting in the line and messing up the readings.  After about a week or so, we finally were able to relax a little.  Then Noah got sick.  I called his nurse and they phoned in breathing treatments, antibiotics and oxygen.  We did not have any of this in the hospital so there were a few nights there that we had to get use to the new equipment (oxygen concentrator and nebulizer).    Eventually, he got better.  We were able to wean him off the vent (not because he couldn't tolerate it but because it made us nervous for him to be off of the vent).  Eventually we got rid of the feeding pump.  Now we have the vent, pulse ox (which we use every night), CO2 machine (which we do spot checks), suction machine, oxygen concentrator (which we use only when he's sick).  Depending on how long the trip, sometimes we even leave the vent at home or in the car.  We usually leave the suction machine in the car.  Noah's "go bag" goes everywhere he goes.  This bag contains everything needed for emergency trach changes and has an ambu bag (that blue resucitation bag you see on tv all of the time).  Traveling around town is still somewhat of a pain but it is much easier now.

Vacation is another matter.  Noah has 4 suitcases. One with all of the normal baby stuff, one with all of the vent supplies (circuits, filters, swivels, water bags, etc), one with all of the trach supplies (trachs, trach ties, extra catheters, gauze, saline bullets, etc), and one for just all of the power cords.  Every machine has its own power cord and we always take our own surge protector plus extension cords and a stool to place the ventilator humidifier.  Then we have all of our suitcases.  Plus, blow up bed or playpen for Noah to sleep. Not to mention the huge stroller that we need to carry the equipment if we go out all day somewhere.  Chris bought a roof bag, which helps tremendously.

Over the last two years, we have learned a lot about traveling and packing for trips with all of our extra baggage.  If there are any moms (especially SN moms) out there who have questions or want to see pictures of our setup, please feel free to comment or email me. 

Traveling with a SN child is difficult but manageable.  The equipment is a pain to deal with but it keeps our son alive.